When I look back, I realize that we started this particular chapter of our journey over a year ago. Last September we took Miss K into the intake appointment for Speech and Language after a referral was placed the month before. Here we are 15 months later and the bulk of the activity has occurred in the last six months.
December 3rd.
That is our outcome appointment with with autism team that will tell us whether our little girl falls on the spectrum or not.
I'm conflicted.
On one hand, no one wants their child to have autism, but on the other hand, given her issues, her being on the spectrum means she'll be able to get support that we couldn't afford to do if we had to do it on our own. And that's huge!
She started nursery in September and it's been amazing to watch her bloom. Her language is progressing dramatically (as we expected it would), and she's participating in groups more than I have ever seen before. She still freaks out in large groups, and new places have her throwing herself into our arms to be held pretty quickly, but she's better than she used to be.
The thing that hasn't gotten that much better is her meltdowns. There's tantrums... and then there's the meltdowns. Twenty to thirty minutes where she is raging and inconsolable- hitting, kicking, screaming and everything. It's exhausting. And scary, because the rage is directed usually at the one person who's around and telling her no and setting her off. Me.
In those moments I have to become detached, while still providing the comfort she needs and make sure she stays safe.
It's bloody hard!
In those moments it's so difficult to see my child, and it's like someone else stepped in and possessed my child. Disconcerting is one way to describe it.
I'm taking a parenting class. It's part of the Triple P program and I'm doing a level four group class. There classes are small and all of us are dealing with challenges with our children that are above the usual small child troubles.
Lots of people I know knows someone who has a child with autism or works with children with behavioural issues, but to sit in a room and share our frustrations and our loves, and feel it's okay to be at our last and final straw, well, you can't put a price on that. It's immeasurable.
And I am very grateful to have a team of people to work with us right now. Who knows what will happen after the 3rd, but currently we have her GP, her nursery workers (2 key workers plus everyone else), Speech & Language therapist (plus an assistant), Paediatrician, Occupational Therapist and possibly a Educational Psychologist. That's a lot of people!! And I'm grateful for each of them!
We have a physical next week for Miss K, and then it'll be a (in the grand scheme) short wait till the outcome meeting.
Am I nervous? Yes. But I'm also more than ready for this. We need answers and specific help and hopefully we can smooth out the more challenging wrinkles in raising our lovely, funny and bright little girl. Who just turned 4 last month! And whom I registered for school for next year already. Queue overly dramatic mommy faint...
It's been a reminder for me lately just how fleeting life can be, that moments pass before you can process them. It's ever a reminder that as much as we need to plan for the future, we need to live in the moment.
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Sunday, November 17, 2013
Thursday, August 29, 2013
Dodging Bullets
I've started posts and then deleted them. I've written them in my head sooooo many times I've lost count. I think there is a part of me that hasn't wanted to write it down for fear of... judgement maybe? But really, at the end of the day, the truth is that last month brought forth every fear I have about a very complicated topic:
Another baby.
I don't want one. End of story.
Well, not quite.
I have a lot of reasons for being perfectly happy with the one child we have. Health issues from my fibromyalgia for one. A couple nights poor sleep and my body rebels. I just can't do the being awake every 2-3 hours for days on end with a newborn. I can't. I will go crazy... again. And that fear of Postpartum Depression is not a small matter. I don't have the luxury of not being okay. My husband travels a lot and it's often just me and Miss K. Add a baby to the mix and I'd lose what little sanity I have left and I'm not sure about my ability to bounce back so well, even with the right medication.
We're a long way from home. 7000 kilometres from our families. I have friends here but no one who could drop things if I really needed help. They, after all, have 2 or more kids themselves. Support networks are really, really important and mine just isn't as good as it would need to be.
Then there is the whole thought of trying to conceive and carry a pregnancy that makes me feel ill. I cannot do another miscarriage. I just can't. The second was seriously devastating to our marriage and I don't want to go through that again. I realize that that is just plain fear. I accept that. I can own that emotion.
We're broke. Like barely scrapping by. We can't keep out of overdraft because we need to buy food. When choosing between maintaining good credit and eating, it's not a hard choice. We scrimp and rarely splurge on anything and it sucks because we have so many goals, so many things we want to do and experience while we're living in the UK. And we just can't. Basic needs first. Which is a drudgery that is hard to explain and rather demoralizing for a couple who feels like they should be "settled". Add a baby to this mix? And knowing that it is unlikely I could breastfeed would need formula? Are you kidding?
Then there is Miss K, whom is possibly autistic and whom I have to give 110% of my energy to just to make it through each day. Some days are good, some days are awful. She needs so much from us and I want her to have what she needs so that she can find her way in this crazy world.
But there is the one fundamental and most poignant reason to not have another baby. I don't want one. I hold newborns and older babies of friends and I smile and coo and love them to bits. But there is never a moment when I get the pang to have another one. And having had that so strongly in the first place that we tried to conceive those years ago, I know when my heart is telling me to go for it and when I should not. This is my head and heart uttering a resounding 'NO!'
For me, our family is complete. But it's been hard to tell people this, to get them to understand. I hear 'oh, you'll change your mind in a few years'. Even if that was true, my health is an overweighing concern and I have to take care of myself. My family needs me to be healthy (body and mind), and frankly, so do I.
I can answer the question 'so, is that your only one?' with a frank and happy smile and say 'yep'. She's the light of our life and makes me laugh, even when I sometimes want to cry. So is so utterly lovely and amazing to me, even on the days when motherhood feels so disheartening.
Things could be better (by a lot), but I like our family as it is. This makes sense for us, both now and in the future. We wish we could give her more somedays (especially in the way of activities to help develop some of her skills), but we're doing the best we can and we give her all the love she could possibly want.
Which is why last month brought reality crashing down around us in a very big way.
We had a pregnancy scare. Do you know how bizarre it is to say that after having such difficulty having a baby in the first place?
It's a complicated story, but suffice to say, after being so damn careful all the time, there was an oops right at my fertile part of my cycle. I was devastated at even the possibility that I could be pregnant. Angry and emotionally numb in turns. I had to stop and think for the first time in my life, could I do this? Did I have a right to go through with it if I was? How could we possibly manage? Some people would say, 'oh you just do'. But at what cost? If it would put us into true poverty, destroy my health and well being and impact my family negatively, isn't that too much? I wrestled these questions against the fact that having a viable pregnancy is a miracle for me, so if that was the case, how would I feel? For me, if I was pregnant, there was no situation that had a positive outcome. None.
10 days later (I've got short but clockwork cycles), right on time, I got my period and a negative test. I tested again about 4 days later to be sure. Negative.
For someone who had wanted positives so badly before, there was nothing less than ecstatic relief.
Deep breath.
There are things to think about, decisions that need to be made that require both my husband on I to be on the same wavelength. For now though, I can know that we dodged that bullet. And yet, it feels like it still grazed me because I think about it lots, pondering in turns what I would have chosen. I still don't know and that is the part that is difficult. It is a narrow miss that has impacted me just as much as any of my pregnancies (miscarried and successful alike) and I can't help but think it will mark me just as much.
Another baby.
I don't want one. End of story.
Well, not quite.
I have a lot of reasons for being perfectly happy with the one child we have. Health issues from my fibromyalgia for one. A couple nights poor sleep and my body rebels. I just can't do the being awake every 2-3 hours for days on end with a newborn. I can't. I will go crazy... again. And that fear of Postpartum Depression is not a small matter. I don't have the luxury of not being okay. My husband travels a lot and it's often just me and Miss K. Add a baby to the mix and I'd lose what little sanity I have left and I'm not sure about my ability to bounce back so well, even with the right medication.
We're a long way from home. 7000 kilometres from our families. I have friends here but no one who could drop things if I really needed help. They, after all, have 2 or more kids themselves. Support networks are really, really important and mine just isn't as good as it would need to be.
Then there is the whole thought of trying to conceive and carry a pregnancy that makes me feel ill. I cannot do another miscarriage. I just can't. The second was seriously devastating to our marriage and I don't want to go through that again. I realize that that is just plain fear. I accept that. I can own that emotion.
We're broke. Like barely scrapping by. We can't keep out of overdraft because we need to buy food. When choosing between maintaining good credit and eating, it's not a hard choice. We scrimp and rarely splurge on anything and it sucks because we have so many goals, so many things we want to do and experience while we're living in the UK. And we just can't. Basic needs first. Which is a drudgery that is hard to explain and rather demoralizing for a couple who feels like they should be "settled". Add a baby to this mix? And knowing that it is unlikely I could breastfeed would need formula? Are you kidding?
Then there is Miss K, whom is possibly autistic and whom I have to give 110% of my energy to just to make it through each day. Some days are good, some days are awful. She needs so much from us and I want her to have what she needs so that she can find her way in this crazy world.
But there is the one fundamental and most poignant reason to not have another baby. I don't want one. I hold newborns and older babies of friends and I smile and coo and love them to bits. But there is never a moment when I get the pang to have another one. And having had that so strongly in the first place that we tried to conceive those years ago, I know when my heart is telling me to go for it and when I should not. This is my head and heart uttering a resounding 'NO!'
For me, our family is complete. But it's been hard to tell people this, to get them to understand. I hear 'oh, you'll change your mind in a few years'. Even if that was true, my health is an overweighing concern and I have to take care of myself. My family needs me to be healthy (body and mind), and frankly, so do I.
I can answer the question 'so, is that your only one?' with a frank and happy smile and say 'yep'. She's the light of our life and makes me laugh, even when I sometimes want to cry. So is so utterly lovely and amazing to me, even on the days when motherhood feels so disheartening.
Things could be better (by a lot), but I like our family as it is. This makes sense for us, both now and in the future. We wish we could give her more somedays (especially in the way of activities to help develop some of her skills), but we're doing the best we can and we give her all the love she could possibly want.
Which is why last month brought reality crashing down around us in a very big way.
We had a pregnancy scare. Do you know how bizarre it is to say that after having such difficulty having a baby in the first place?
It's a complicated story, but suffice to say, after being so damn careful all the time, there was an oops right at my fertile part of my cycle. I was devastated at even the possibility that I could be pregnant. Angry and emotionally numb in turns. I had to stop and think for the first time in my life, could I do this? Did I have a right to go through with it if I was? How could we possibly manage? Some people would say, 'oh you just do'. But at what cost? If it would put us into true poverty, destroy my health and well being and impact my family negatively, isn't that too much? I wrestled these questions against the fact that having a viable pregnancy is a miracle for me, so if that was the case, how would I feel? For me, if I was pregnant, there was no situation that had a positive outcome. None.
10 days later (I've got short but clockwork cycles), right on time, I got my period and a negative test. I tested again about 4 days later to be sure. Negative.
For someone who had wanted positives so badly before, there was nothing less than ecstatic relief.
Deep breath.
There are things to think about, decisions that need to be made that require both my husband on I to be on the same wavelength. For now though, I can know that we dodged that bullet. And yet, it feels like it still grazed me because I think about it lots, pondering in turns what I would have chosen. I still don't know and that is the part that is difficult. It is a narrow miss that has impacted me just as much as any of my pregnancies (miscarried and successful alike) and I can't help but think it will mark me just as much.
Thursday, April 4, 2013
The Assessment Checklist
Spring has finally arrived here; though I should point out that it's still dipping below 0 Celsius at night. With the time change, it's light out at 8pm and after hubby gets back form this trip, I am looking forward to starting my evening runs again.
Yesterday, I met up with a couple friends and their kids and we played in the residential garden at one's townhouse. It's a concept that's quite common here in the UK, where a garden (read: fenced in green space, not necessarily with flowers) can be accessed only by the residents who live around it. My friend has a key that she needs to use to get in and out, so it's safe to let the kids run around without worrying about them getting out, and there are no dogs allowed, so no worries about dog crap in the grass where they play. There are plenty of benches, a small treed area for them to poke about and lots of grass with some hills to slide and roll down.
We took to plopping ourself on the grass and sunning ourselves and pretending it was summer while we chatted and kept an eye on the kids, who were mostly content to kick a ball around or play with the pails and shovels in the gravel walking paths.
Miss K had her hearing test yesterday. It consisted of her sitting at a small table with my behind and one of the technicians in front of her. There was a small wooden tray with holes in it and little wooden people that sat in the holes. On either side were large speakers. The game was that when she heard a tone play, she was to put a person in a hole. they played loud tones, quiet tones, middle, high and low pitched tones. They played them from different speakers too.
She passed with flying colours.
Which is a relief, but means that her issues with sound discrimination and attention are likely related to her likely autism.
But one step done and they told me it was good I got it done because Child Development would have wanted her to have it done anyway.
Yay for being ahead of the game for once!
Yesterday, I met up with a couple friends and their kids and we played in the residential garden at one's townhouse. It's a concept that's quite common here in the UK, where a garden (read: fenced in green space, not necessarily with flowers) can be accessed only by the residents who live around it. My friend has a key that she needs to use to get in and out, so it's safe to let the kids run around without worrying about them getting out, and there are no dogs allowed, so no worries about dog crap in the grass where they play. There are plenty of benches, a small treed area for them to poke about and lots of grass with some hills to slide and roll down.
We took to plopping ourself on the grass and sunning ourselves and pretending it was summer while we chatted and kept an eye on the kids, who were mostly content to kick a ball around or play with the pails and shovels in the gravel walking paths.
Miss K had her hearing test yesterday. It consisted of her sitting at a small table with my behind and one of the technicians in front of her. There was a small wooden tray with holes in it and little wooden people that sat in the holes. On either side were large speakers. The game was that when she heard a tone play, she was to put a person in a hole. they played loud tones, quiet tones, middle, high and low pitched tones. They played them from different speakers too.
She passed with flying colours.
Which is a relief, but means that her issues with sound discrimination and attention are likely related to her likely autism.
But one step done and they told me it was good I got it done because Child Development would have wanted her to have it done anyway.
Yay for being ahead of the game for once!
 |
| My girl's 'thoughtful' pose... |
Subscribe to:
Posts (Atom)